The Worst Symptoms of a Crohn's or UC Flare
Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease is hard. Crohn's and colitis are often invisible illnesses, and therefore not always understood by others. We want to shed light on these challenges during Crohn's and Colitis Awareness Week (December 1-7). And we asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here's what they had to say!
When asked, "What’s the worst symptom you experience during a flare-up?" they shared different symptoms – from crippling fatigue to back pain that stops them in their tracks.
Worst symptom ever: crippling fatigue
Colin talked about the physical and mental aspects of fatigue. He said, "The worst symptom I experienced during a flare-up was always the fatigue. No matter how much sleep I got and no matter how much 5-Hour Energy I guzzled, I was always tired. I felt like I was swimming upstream and I was always looking for the next chance to shut my eyes. It just felt different from 'normal' tiredness. I didn’t want to get off the couch and when I did, I just wanted to go back. The fatigue reached past the physical. When I was at my sickest, I was a working journalist, and I found that fatigue left me in a constant mental fog."
Sahara also mentioned fatigue, saying, "Fatigue. There's pain relief for pain. Options to manage the constant toilet trips – working from home, bulking meds, changing your diet. A multitude of sore bottom relief options. But the fatigue, it's always just something I cannot fight."
Kelly shared how hard it is to get a restful night of sleep with all the pain. She said, "The exhaustion of moving your bowels so many times a day, the awful pain in your joints, and the inability to find a restful night's sleep because of pain and urgency take away hours and hours of what could be decompressing and healing rest."
Crohn's and colitis abdominal pain
Amanda painted a picture of how horrible the abdominal pain during a flare is. As she stated, "Pain. Earth-shattering, mind-numbing pain. Even when I am not running to the bathroom or having frequent diarrhea, I experience a significant amount of abdominal pain during a flare-up. Pain that sometimes requires pain medication just for me to be able to breathe deeply. Pain that sometimes requires IV pain medication just for me to be able to breathe without crying. Pain that is nearly impossible to explain to anyone who has not experienced it."
Natalie also discussed abdominal pain. She said, "The worst symptom I experience during a flare-up is the gnawing/stabbing abdominal pain that lasts for hours upon hours. The type of pain that causes you to vomit and even blackout at times. When I'm in the middle of a bad flare that requires a trip to the ER, I often can't even walk on my own because the pain in my stomach is so intense."
Excruciating back pain during a flare
On top of the abdominal pain, Brooke experiences back pain during a flare. She shared, "I have always had this excruciating back pain when my flares begin. It feels like someone is scraping hot glass up and down my back. It happens at the beginning of the flare and while I am in the restroom. I had it consistently before I had my colon removed. Now, if I'm experiencing a pouchitis flare, then I have the same back pain."
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